Tuesday, December 19, 2006

When Kaiser Permanente forced kidney patients to transfer from the UC Davis and UC San Francisco transplant centers to its own fledgling program, it shortened their lives -- and created a scandal.

But the Kaiser story represents much more than a single health maintenance organization's bad decisions. It reveals a fundamentally broken transplant system, a system that spends its time coping with an ever-growing, life-threatening organ shortage rather than finding ways to reduce or end it.

More than 66,000 Americans are languishing on the national waiting list for kidneys -- 10 times the number of kidneys transplanted from deceased donors each year. And the list keeps growing, with a queue of more than 100,000 expected by 2010.

Kidney patients literally live or die by where they are on the waiting list. While getting progressively sicker, they must spend several hours at least three times a week hooked up to a dialysis machine, the kidney-disease equivalent of an iron lung (it prolongs your life but imposes a physically debilitating prison sentence).

Increasing the supply of deceased donors, while desirable, is difficult -- organ donors have to die healthy and in exactly the right circumstances. But even if every eligible cadaver were harvested, it wouldn't fill the gap. We need more kidney donors, lots more. And they need to be alive.

Unfortunately, our laws and culture discourage healthy people from donating organs, as I learned this spring when I gave a kidney to a friend.

My parents were appalled. My doctor told me, "You know you can change your mind." Many people couldn't understand why I didn't at least wait until my friend had been on dialysis for a while.

This pervasive attitude not only pressures donors to back out, it shapes policies that deter them. Some transplant centers require intrusive, demeaning psychological probes that scare people off. Some bioethicists suspect that donors suffer from a mental disorder, as opposed to being motivated by benevolence or religious conviction.

The scrutiny is particularly nasty when healthy people want to give their organs to strangers -- not truly unknown people, mind you, but patients they have gotten to know through Internet sites or press coverage.

Many transplant centers flatly refuse "directed donations" to specific strangers. Some argue that it's "unfair" for patients to jump the queue with personal initiative and an appealing story; others insist that such donors aren't to be trusted (they must be either criminal or crazy). Posters at livingdonorsonline.org warn givers to never even mention the Internet, lest their good intentions be thwarted.

Sandra Grijalva, a San Francisco woman with polycystic kidney disease, asked Kaiser officials if she could find a donor online -- after having one of her friends disqualified because of high blood pressure. "They said absolutely not," she says. The donor, Kaiser maintained, might someday try to extort money. (So might your cousin, but at least you'd be alive.)

Instead of dire possibilities, consider a cold reality: Without tens of thousands of new living donors, most of the people on that very long waiting list are going to suffer and die on dialysis. The transplant community's top priority should be increasing the supply of willing donors.

The most obvious way to increase the supply of any scarce commodity -- paying more for it -- is illegal. Federal law blocks transplant centers, patients and insurers from compensating donors in an above-board process, with full legal and medical protections. The growing and inevitable "transplant tourism" industry, and even shadier organ brokers, are the kidney equivalents of back-alley abortionists.

Legalized financial incentives would encourage more people to volunteer their organs. Donors would probably still be relatively rare, just as surrogate mothers are. Many, like me, would still help out without payment, just as some people get paid for giving blood or fighting fires while others do it for free.

Paying donors need not hurt the poor, any more than paying dialysis centers does. Compensation could, in fact, help low-income Americans, who are disproportionately likely to suffer from kidney disease. A one-year tax holiday for donors would nudge rich people to help. A pool to make up for lost wages (legal, but rare today) would enable many otherwise willing friends and relatives to contribute.

But even talking about incentives is taboo to some self-styled patient advocates. On Monday, the American Enterprise Institute will hold a conference in Washington on incentive-based transplant reforms. (It's organized by my kidney recipient, a physician and health-policy scholar at the institute.) When the National Kidney Foundation heard about the conference, its chief executive, John Davis, complained to the institute's president, "We don't see how an AEI forum would contribute substantively to debate on this issue."

Davis' group adamantly opposes donor compensation, lobbying against even experimental programs and small tax credits. It's as though the National Parkinson Foundation opposed stem cell research, or thought researchers should work for free.

Even a limited market in kidneys would transfer power from the rationing establishment to kidney patients and supportive communities. It would give patients more options. Grijalva, who works with developmentally disabled seniors, would welcome the shift.

"My biggest fear and my biggest feeling," she says, "is that I'm totally out of control, that these people have the control and they are making all the decisions, and I have absolutely no input whatsoever."

Virginia Postrel is a contributing editor to the Atlantic and the author of The Future and Its Enemies and The Substance of Style.